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Glioblastoma Grade IV

espurl
Posts: 4
Joined: May 2009

5-30-09
My sister was recently diagnosed with Glioblastoma and we are wanting to know as much as possible on treatment options, effects of , and alternative therapies. We understand it is important to educate ourselves but then to decide what our own journey will look and feel like. We know the power of thoughts and how thoughts manifest. Please help us to shine even more light today.. Comments please

NextSteps
Posts: 3
Joined: Dec 2010

Dear csharger
Your email triggered my subscrption and you talk my talk. Being a former TV journo with GRADE 4 removed last month, I am certainly interested in your shared challenge.
It has been a long time between your posts - are you about?
Regards
Ms Next Steps

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:

Just checking in to see how you are doing ? I hope you are living life to the fullest .

Edna

lizmh
Posts: 3
Joined: Jun 2009

Hi: I am so sorry about that is happening to your family! I recently learned of a brain tumor foundation whose mission is to educate folks about treatments. It's called the Bruce Kaye Brain Tumor Foundation. Check it out......it may be helpful to you. Sending peace and love. Liz

miraclesmom
Posts: 4
Joined: Jul 2009

I know that the diagnosis of GBM can seem like a death sentence after hearing the statistics. But stay strong. Every day that my daughter remains in remission is one more day that we have beaten this disease. We enjoy every precious moment that she is in our lives, and we continue to pray for a lifetime with her. I know of nothing that I can offer you in regards to alternative therapies and low-risk treatment options. But I do want you to know that there is a whole community here supporting you.

lilpie9602
Posts: 1
Joined: Sep 2009

My mother in law was just diagnosed with grade 4 Brain cancer, and it seems like I am alone even though I have my bro in laws and hubby. I am very close with her and have been married to my hubby for 9 years, Is there a cure for Brain cancer does everyone seem to lose the battle???

NCAA XC's picture
NCAA XC
Posts: 25
Joined: Nov 2009

Where my wife got a great report yesterday!
She had her second craniotomy in September and after chemo/radiation we came back down to Houston from Indianapolis on January 4th where MRI's showed no activity and no cancer.
She had all of her tumor removed here in Houston (3cm) after the doctors back home left 80% in her brain and said they could get no more.
We looked in the US News and World Report and found what at the time was the number 1 cancer center in the US and just made the call.
Don't know if it will last, but the MD Anderson Cancer Center certainly gave me and my wife HOPE and so far so GOOD!
She starts on a clinical trial next week....
Check ups at MD Anderson every 8 weeks afterwards..

Keep up the fight!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:

Just checking in to see how your wife is doing. We just back from MD Anderson. My daughter was originally diagnosed with AA3 but MD thinks it is a Glioblastoma . Can you tell me your wife's journey. God bless you and your wife.

Edna

tpot25
Posts: 2
Joined: Nov 2011

I am still here. I am a 13 year survivor. I was 52 when diaginoised with stage4 glio blastoma multiforma.

jhbeamer
Posts: 3
Joined: Dec 2011

Hello and thank you for your inspiring message!
My father, John, and I are seeking help. He is 68 and was diagnosed with GBM grade 4 last December, had surgery, radiationa and temodar. He was switched to Avastin in October of this year. He is doing well, but we want a cure! Please share your insights on successful treatments and regimens.
Wishing you a beautiful holiday.
Best wishes,
Jennifer and John

anrish
Posts: 2
Joined: Sep 2012

Hi there, I would like to know what treatment you had for yourself to survive for 13 years. Please get in touch with me, I really would like to hear from you.
Thanks

GMurphy
Posts: 2
Joined: May 2010

Hi!
My daughter, 15, is on her second GBM tumor - first was April 2008, removed surgically, had radiation, then Temodar, looked gone, off Temodar by summer 2009, cancer returned in a different area (it was a ball before, now it's more scattered) in her brain in October, and they found it spread down her spine in November.

The thing is she's doing REALLY well!! And the doctors are positively tickled.

I know of a survivor - Ben Williams, PHD, He wrote the book Surviving "Terminal" Cancer. He had a GBM. It can be done! He was really into supplements, which are actually amazing. Grace took some for almost two years, and hated it the whole time. She's refused them and now, frankly, her numbers aren't as good. But then she's not eating much either. Still, she's moving well, and that's huge progress from last fall.

To be fair, she was put on a radical course in November - Temodar 160mg daily, irinotecan & Avastin every other week and she was on steroids. She went off steroids (thank god - her stretch marks from the rapid weight gain & screwy blood thanks to the steroids Avastin were insane) in February, then cut herself and her skin was so crazy (the stretch marks were breaking open) they took her off all chemo for a few months to heal. She's now back the Temodar and the Irinotecan. She just has an MRI and I'm waiting for results, but I expect positive. :-) You have to know - she was in a wheelchair in November and could barely raise her head. The cancer was all over her spine. The difference is phenomenal.

I believe the success with her cancer is twofold - (along with the chemo) we're doing reiki (SO easy to learn - I took the course & do it myself with her) daily, and hypnotherapy weekly. If you haven't read Bruce Lipton's Biology of Belief, it's a worthy read. In short, it has been scientifically proven, by Quantum Physics in particular, that perceptions/emotions affect us on a cellular basis. So if you resolve the negative memories they hold (through hypnotherapy), you cure the cells. I am convinced this is why Grace does so well!! It's the future I'm telling you - look into it. It's working for us.

jhbeamer
Posts: 3
Joined: Dec 2011

Hello and thank you for your message. My father, John, is fighting GBM grade 4, had surgery, radiation, chemo, and we are seeking to be as proactive as possible. Please send us info on the reiki and hynotherapy resources you have found to be helpful, and any other suggestions.

Best wishes for a beautiful holiday.

Jennifer and John

Jamesysmom
Posts: 2
Joined: Feb 2012

My son is almost 14 and was diagnosed in Nov. with a stage 4 glioblastoma. He had been having headaches, getting sick off & on for about 3 weeks and was "forgetful." I took him to the dr. on oct 28th where he was proscribed prozac for depression & phenergan for vomitting. We set up an MRI or Cat scan (I honestly cannot remember) & upper GI for Nov. 2nd at our local hospital. On Nov. 1st something, or someone kept telling me to leave work early & take him to the ER at UVA med center. I did & that night I was told he had a brain tumor! I can tell you that was not anywhere in my mind as to what was wrong! He had to have an emergancy drain to relieve the preasure in his brain right there in the ER! The Dr. said if I had waited for the next days apointment he would not have survived the night!
Dr. John Jane Jr. did a resection on Nov 2nd & removed about 30% of tumor, it was deep on his thalmus & is pressing on his brain stem. On Nov. 3rd he woke up & was able to nod yes & no to questions. On Nov. 4th Dr. John Jane Sr. performed another resection & removed another 30-40% of the tumor & adding a 2nd drain. He woke but was unresponsive. On Nov. 5th a resident saw signs the preasure was dangerously high again & they added a 3rd drain.
Over the next 2 weeks he was in the PICU at UVA and was awake but "non-responsive" although he reacted to my pressence and his "storming" calmed if either I or his older sister touched him. He was moved to KCRC (Kluge Childrens Rehab Center). The Dr.s & nurses at UVA were not optomistic, they didn't expect him to wake up and talk to us. We were given 3 months without treatment 12-18 with treatment, but treatment was not an option if he was non responsive. At KCRC they weened him off Methadone & Valium and he woke up on his own! They worked with him in SP, PT & Ot...in mid Dec. he started to eat & drink real food & right before XMas he spoke to me for the 1st time in almost 2 months! Today my son walked out of MD Anderson in Orlando where he received his 30th of 33 radiation treatments! And tonight is #41 of 42 temodar doses, he talks, albeit in a strong whisper, walks on his own & is the same crazy kool kid I took to the ER. I don't know what will happen next, but I know he is a fighter. We are exploring other treatments, prayer helps too! But his attitude is amazing, he is my hero. I am terrified of the next MRI, like all the ones before I wait on the edge of a razor for the results. Thankfully it has not grown yet & we hope this treatment will work. He will have 10 months of 5/28 temodar starting in April. His vission & motor skills were affected on his left side due to the 2nd surgery, but he is doing things every week that he couldn't do the week before, he started whistling last week! He was left handed and misses drawing, that is his goal in OT, but his writing it very legible even writing with his right hand. I thank the Dr.s at UVA for saving his life, The MIRACLE workers at Kluge for giving him back to us! And Arnold Palmer & MD Anderson in Orlando for helping us fight this terrible war! The only thing I could ask for is I think I need help or someone to talk to so that I can be my strongest for him. He is surrounded by family and support, which is why we moved here to FL from VA in Jan., but I feel very alone and don't know where to turn. He is SO strong and I don't want to let him down in any way, does anyone know of any support groups, I don't have any insurance for myself as I never went back to work after he was admitted to the hospital, we have all (my 3 children & myself) moved in with my ex-husband & his wife so that He can have all the love & support he deserves through this fight, He is my youngest & I think all of us could use some outlets. Any suggestions?

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi

How is your daughter doing ? My dsughter has the same chemo plan and it is keeping her stable as well. She was first told she had AA3 but another facility thought it was GBM4. She does not have it in her spine though. Our daughter is 18. I am sorry to hear about your daughter. How did she do when you took a break from chemo ? I send you God's blessings .

Edna

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi

How is your daughter doing ? My dsughter has the same chemo plan and it is keeping her stable as well. She was first told she had AA3 but another facility thought it was GBM4. She does not have it in her spine though. Our daughter is 18. I am sorry to hear about your daughter. How did she do when you took a break from chemo ? I send you God's blessings .

Edna

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:
I was trying to respond to GMurphy but it was not working. I hope you get this. How is your daughter? I pray she is well. My daughter is 18 yrs old with same diagnosis and the same regime. Her MRI's are stable, but I am very worried about future and what will happen when chemo stops. Please let know how you are doing. God Bless you and yours.

Edna

ambs108
Posts: 1
Joined: Jun 2010

Hi,

Im a 19 year old girl whos world recently came crushing down. My Dad was diagnosed with Glioblastoma stage 4 at the end of April 2010. Im currently living in Australia and my Dad lives in New Zealand. (there isn't as many support groups over here)

My Dad is only 53 years young and before any of this happened he was fit and healthy. (although a previous smoker)Dad was originally admitted to hospital after experiencing extemely painful headaches. We knew it was something serious as Dad hates hospitals and avoids any medical practice at all costs. After having a MRI they discovered that my Dad had a large brain tumour. 8cm x 6cm x 4 cms on the left side of his brain. They immediatly put him on steriods in effort to shrink the tumour. He was kept in the hospital for around 2 weeks. He was allowed to go home during the day and had to return to the hospital at night so he could be monitored. A few weeks later the scheduled Dad's operation the surgeon hoping to remove around 40% of his tumour. The surgeon advised my Dad of all the risks involved with the brain surgery,they feared that Dads short term memory and speech could be affected, he told Dad that he may not be able to talk at all after the operation.

After Dads operation he woke up talking much to all of our delight. The surgeon even managed to get out around 98% of his tumour which was fantastic news. It has since been just over 3 or 4 weeks since Dads operation and he is doing good. Slowly getting his memory back and his speech and concentration has improved significantly, although he gets tired very easily some days.

He is due to start radiation either this week or next week. He will have this 5 days straight for 6 weeks and then he will start taking the chemo in pill form until after christmas.

Every day and night I pray that Dad will still be around to walk me down the aisle or to meet his future grand kids.

I love my Dad with all my heart and it is truely so upsetting hearing your 'bullet proof' dad get upset when he has to tell you the dreaded words .... "I have cancer"

My Dad is the bravest and strongest person I have ever known and Im proud to call him Dad.

xxx

j_waffles
Posts: 22
Joined: Jun 2010

Might I suggest alternative therapies for your dad? My dad had a Grade 4 OligoAstrocytoma and wasn't doing so well right after his surgery and during chemo when he was 38, but now he's 52 and going strong! And it's mostly thanks to some holistic and complementary medicine treatments he did. My dad now runs marathons and maintains a health diet with no processed sugars.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

i would be very careful of relying on holistic and complementary medicine treatments for making any measurable or impact for any cancer or stage. Research in depth at the top cancer centers in US and ask many brain cancer survivors and caregivers too. You can then compare what you learned to holistic treatments including diet, tea, herbs, accpunture, vitamins, spiritaul, juices and on ..........................................

Holistic and comp medicine can be used WITH conventional treatments but not as a primary solution.

Read MD Anderson web site on brain cancer straegies and focus on Grade 4 OligoAstrocytoma

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/brain-cancer/index.html

j_waffles
Posts: 22
Joined: Jun 2010

Sorry, I meant holistic in ADDITION to the western treatments (surgery, chemo, radiation). Though he never had radiation, since our neurologist doesn't think it's worth it with all the side-effects down the road. You're right.. it's good to research things to keep better informed in the treatments. My tumor is only Grade 2, thankfully, but it's never too early to know my facts on therapies, diet and lifestyle.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

I read your profile and posts and I think highly of your attitude, spirit, and humor. Your young and have so much life in front of you of which you can look back 40 yrs from now and say, "i made the most of it"

j_waffles
Posts: 22
Joined: Jun 2010

Thanks! My positive attitude is part of the healing, actually :)

megu2day
Posts: 2
Joined: Jul 2010

I read your profile as well. As a patient of Hairy Cell Leukemia in my 19th year of remission (10 was the max according to conventional wisdom), I agree with the laughter is the best medicine approach. ANYONE can be the exception!

Good health,

Greg

GBM Daughter
Posts: 1
Joined: Apr 2011

Hi. I wanted to know your dad is doing?
My dad was diagnosed with GBM in Oct 2010 at 60 years old.
We couldn't believe it and our whole world has been torn apart.
He had surgery the first week of November to remove one frontal tumour but the second they could not remove. He did amazing after the surgery and they were able to resect almost 100%.
He did six weeks of radiation coupled with chemo (Temodar) which he completed Dec 30th, 2010 and is also on decadron (steriod).
During radiation he was feeling really good. After radiation he started doing chemo (Temodar) 5 days on and 25 off. The chemo has really made him very tired and weak. We just received the results from his last MRI on Apr 20 and there are no new growths! We were so relieved and so happy! Two days later my father became very weak, almost unable to walk. These were short episodes but very, very frightening. He spent most of the day sleeping and had no energy at all. I am concerned because if there are no new growths and we haven't started the next chemo treatment (therefore it has been almost four weeks since his last dose) why the sudden decline in his well being? He had a slight sore throat, so perhaps he was fighting an infection, we are not sure. When I called the doctor he suggested we increase his steriod to 4 mg twice a day. My dad had been on 2 mg once a day for the last 6 weeks. We have followed this advice and have notice some improvement. He also experience a new symptom on Saturday Apr 23 and again yesterday (Apr 26). On Saturday he said he lost the feeling in his left hand. He felt like there was no feeling in any of the digits. This lasted less than half hour and then the feeling returned. Yesterday he felt this on the left side of his face. He felt it was numb, like when you come back from the dentist. Has anyone had similar symptoms?
I just want to know that we are doing all that we can. The nature of GBM is so aggressive and am so happy to hear that he has no new growths and that the chemo is helping to keep this beast under control. I just want to make sure that we are not missing out on anything else that we could do.

My dad has given me everything and a wonderful, wonderful life. I just want to do everything I can to make sure he can be with us for many more years.
Yvonne

megu2day
Posts: 2
Joined: Jul 2010

Hi!

Just got back from UC San Francisco today with my Mother in law (stage 4 glioblastoma. they are doing clinical trials for a vaccine that utilizes the tumor itself as a protein to adhere to the white blood cells. It is themn re-injected into the patient to "retrain" the body to kill the cancer cells. My Mother in law will be undergoing surgery on Thursday the 22nd. then a course of radiation and chemo. If the cells quit reproducing, this protocol is good to go. We are in dire straits as well, so this is our beacon of hope.

Prayers to your Dad,

Greg

4hisglory720
Posts: 1
Joined: Jul 2010

My 25 year old, father of a 2 yr old and 9 mo old, cousin was diagnosed on Tuesday, July 20, 2010 with stage IV glioblastoma he also had surgery to remove any that the could see over 99%- as close to 100% as you can with this type of cancer and I would be interested in any follow up that your mother in law has had with this vaccine trial.

Thank you,
An'drea

MAJW
Posts: 2515
Joined: May 2009

My best friend has GLB multiforme stage IV......the vaccine you are referring to .....it has to start with the FIRST initial surgery.......taking a piece of the tumor and essentially making a vaccine for that particual person......this is what she has been told......

Peace be with you......

LBYM
Posts: 1
Joined: Nov 2010

Hi Greg,

How is your mother in law doing? I ask because my niece just recently had a recurrence of GBM and is also a patient at UCSF. I am not sure if this vaccine is going to be an option but I would appreciate some insight as to how your mom is doing as a result of this vaccine.

Thanks,
LBYM

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

if you still are on this site... could you give us an update regarding your mother in law? I have been following this particular vaccine trial with interest and hope.

best,

Julia

adysin
Posts: 1
Joined: Oct 2010

The summer of 2008, I noticed a "spasm" that went down my right arm to my right leg. I reported it to my neurologist, who ignored it and focused on my other complaints. Tests revealed changes in my spine that were no surprise. I reminded him of the spasm down my right extremities, and he then said he'd order and MRI/MRA (why didn't he listen the first time?). MRI in November 2008 revealed a calcification in my brain (I'm told the neurologist was shocked when he saw that rock).
I was referred to the head of neurosurgery who wanted to monitor the calcification for around 3 months. That did not feel right to me, so I asked my neurologist for a 2nd opinion. The second surgeon, upon reviewing my scans, got me in his office the same day and told me it had to come out soon, not in 3 months. I went with that opinion.
February 26, 2009, a 9-hour surgery removed the golf-ball-sized calcification, only to reveal a tumor beneath it. I never thought I would be thankful to have a rock in my head! Otherwise, that tumor would still be there doing no telling what!
I was in the hospital 3 weeks, during which I had 5 radiation treatments. When discharged, I was started on Temodar 21 days on and 7 days off, and Thalomid 28 days. I also took Zofran to prevent nausea.
It is now October 2010 and I am still on the Temodar and Thalomid. The Temodar has been reduced from 140 mg to 100 mg because of lowered neutrophils and Thalomid is now 21 days on and 7 days off, like the Temodar.
The crazy thing is that pathologist from 3 cancer centers do not agree on what type of tumor I have. One says GBM, another says melanoma, and the 3rd says a derivative of GBM. Whatever it is, it appears the treatment is keeping the cancer beast at bay.
My NO is holding another heavy-duty radiation in the wings should the tumor resurrect itself. I have follow-up MRIs every other month. My major side effect from the oral chemo is neuropathy in my extremities and trouble with balance.
That's a bit of my story.

Tiziana
Posts: 2
Joined: Nov 2010

I was wondering if you could help me please. My brother was diagnosed with GBM IV last August 2009, had operation and 98% was removed. He has been on a strict organic diet, heaps of vegies and supplements etc. The tumour has come back near the previous one. He is due to have his second surgery in a couple of weeks. Please let me know what doctor your father saw.

Thanks

Tiziana
Posts: 2
Joined: Nov 2010

I was wondering if you could help me please. My brother was diagnosed with GBM IV last August 2009, had operation and 98% was removed. He has been on a strict organic diet, heaps of vegies and supplements etc. The tumour has come back near the previous one. He is due to have his second surgery in a couple of weeks. Please let me know what doctor your father saw.

Thanks

teachinart
Posts: 7
Joined: Nov 2010

my mom was diagnosed 9/22 with TWO grade 4 glio's ... within 11 days were were at Duke University Medical Center. Do not wait for your local oncologist/nurologist to give you info. Be in charge. Get on the net, find the best possible university-hospital Glioblastoma "meca" and go there!!!!..MD Anderson, National Health Institute, Duke, Boston Mass... whatever.. Just get there. Without the knowledge and experience that is at theses mecas of medicine, you will be kill a horse with a toothpic.

my mom is on her way to Duke this evening for her first "checkup" since beginning her RX. Her tumors are non-sergical and was the 40th person invited to participate in a 41 person study using Avastin, CPT-11, and Tuemador ( don't think I spelled it right) before radiation. This study is going on in 12 other institutions nation wide. Check out Dukes website,and be informed, and be assertive. Your sister deserves it!!!

Joe_N_Cyn528
Posts: 1
Joined: Nov 2010

We went to Duke in October and enrolled in a clinical trial as well. My husband is 35 and has a Glioblastoma IV. He is doing the Avastin radiation and Temodar. You are right don't sit around and wait for a local doc to help I had to very aggressive to get where we are today.

niksit
Posts: 2
Joined: Jan 2011

please and details of doctor treating tumors in kosovo.
i'll be thankful to you.....

niksit
Posts: 2
Joined: Jan 2011

please send details of doctor treating tumors in kosovo.
i'll be thankful to you.....

Amanda G
Posts: 2
Joined: Feb 2011

My brother of 55 yrs of age just had surgery to remove a large GBM from his left frontal lobe. Him, his wife and adult children, live in California and my mom and dad and other sister live in Oklahoma. It is hard. His surgery went very well. Dr.'s were able to remove all the tumor that showed on the MRI. In which I understand can be a plus. They described it as, Dropping a sugar cube in a glass of water, they removed the cube but particles are still floating in there. I know he will undergo more treatment or treatments soon. He is physically fit and has always stayed that way. Now we have to work on keeping him in the right frame of mind. No major side effects from the surgery. A little delay in response sometimes. Comes and goes. The medications he is taking contributes to that. Surgery was a week ago Wednesday. He was home in less than a week. We read soo.. many negative things about this cancer. I know the medical facts are out there but remember the biblical facts are also. I can't walk on water, but Jesus let Paul do it. Keep that in mind. He is there for all of you. Send out your prayers to him to give the doctors the knowledge they need to heal your loved ones and the strength the family needs to get through these tough times. Love to all.

Amanda G
Posts: 2
Joined: Feb 2011

We have done a tremedous amount of research and have found a doctor at Cedar Sinai in California that is known as the Michael Jordan of neurology and treatment of GBM tumors. We are working on getting set up with him for my brothers treatment. He is home and off all pain meds except Tylenol and doing much better. His kids have put him on a special diet they found in their research. I know he's not loving that but we all should be treating our bodies better. Prayers to everyone and if you have any experience with this Doc., His name is Dr. Keith Black. I would love your input.
Thanks everyone. :)

Phylh
Posts: 1
Joined: Oct 2011

Amanda how is your Brother doing, my sister was diagnosed with GBM 4 late August 2011 they were able to remove 90% of it she is going into her 3rd week of chemo and radiation, I'm looking for any info. Thanks

makanica
Posts: 1
Joined: Nov 2011

I am writing you because my mom is very sick.I would like to mention in the beginning that we live in Serbia and that makes a situation worse.
My mom had GBM grade IV diagnosed in July 2010. , she had an operation on 07.08.2010.. Than we waited for results of pathology which came 20.09.2010. and they told us it was GBM grade IV.We , my stepfather and I, decided not to tell my mom abot the grade of the tumor because her father had died of the same tumor 1969.Having in mind that she`s been always talking about that with the fear and very bad emotions we together with our family friend who is neurologist told her that it is grade II and that its not so bad.After that we went on 30 radiation sessions and after that 6 therapies of BCNU.Mom was doing well during the period of therapies.She was eating well,she was positive,I have been giving her vitamins every day ( immunomer,abc plus and ca/mg/zn of Natural Wealth),she was active as always and doing everything she always did.Than she had MRI in end of July that showed nothing,no tumor cells(this was 3rd MRI since the start of the therapy,all of them showed nothing) .In the mid August mom started acting kind a depressive which is nothing unusual for her.We went to our family psychiatric and he gave her anti-depressives,1/2 pill a day.Than a few days later she had a big problem with hernia and was urgently admitted to hospital and operated.After that operation 05.09.2011. everything went wrong.She came back from hospital very psychotic.Than she started sleeping a lot.We thought it was because of the surgery.But as the days went on ,my stepfather and I figured out that the tumor is back.Everything was so fast and she went out by her self last time on her birthday 02.10.2011..On the 03.10.2011. he helped me to take her to bank to do administration work.Till 10.10.2011. it was hell.She was sleeping,having headaches,she was not able to function or walk.On the 10.10.2011. we went to her radiologist without her because it was impossible to take her.She told us that by what we were telling her tumor has regrown and that she should not been put on MRI,only on scanner in the ER if the condition gets vary bad, and gave us a therapy , mannitol 250ml for 3 days and dexasone 2x2mg for 7 days and then slowly decreasing it.During the first week she came back.We were helping her but she could do many things by her self.As they were decreasing dexasone the situation was worsening.In meanwhile we got help from NGO Bel hospice (http://www.belhospice.org/eindex.html) and since then they are helping us 1x week and deciding about the therapy.She is now on 6mg of dexasone,and last week she got 4 days of mannitol which did nothing, but she is at her worst.In diapers,not able to do anything(we are feeding her and giving her fluids,she can`t talk,her left side is useless,both arms and legs don`t function ,her neck is in spasm, we are putting her to sit/lay, she falls asleep while sitting or after we feed her,she is staring at tv but not know what`s on it),sometimes she has headaches or she complains that her eyes are hurting her.We don't know what we can do and our country is not the best place to be sick.My stepfather thinks that maybe we should try second surgery if the neurosurgeon wants to do it.We are going on a meeting with him on 16.11.2011..
Please can you tell me is there any chance that the surgery will help? Do you have any experience with that type of cases?Is there anything more that we can do to help my mom?I am open to all suggestion,and I am desperately seeking help!
Thank you in advance for taking your time to read my e mail and to replay to me!
My mom is 68 and I am her only child.I am 28.
I had time only for writing 1 post so I did copy&paste everywhere seeking help!
Best regards,

Faizal Lutfi
Posts: 3
Joined: Nov 2011

Hi Phylh,

Our daughter at the age of 22 diagnosed with GBM at the Chinese General Hospital here in Manila, Philippines on 1st October 2011 based on the results of CTSCAN & MRI. A combination of Linear Accelerator and Oral Chemotherapy (Temozolomide / Temozam)have been given by the Neurologist & Oncology for an estimated 33 therapy sessions. The therapy session is still ongoing and we are now at the 27th session. The condition of our daughter is continuously improving regaining her balances, eye sights and menstrual period. She can now walk and perform warm up exercises/stretching without feeling of dizziness / nausea. Hopefully and by the power of constantly praying / thanking to God and good help from her doctors, our daughter will be back to her normal life. I will keep posting on the recovery of our daughter.
Any comment from you - I'm sure it will be helpful - thanks in advance.

momatabor's picture
momatabor
Posts: 10
Joined: Nov 2007

Hi my prayers are with you,my brother is a survivor of 4years as of nov 8 2011 he had surgery of an 80% resection,then temadar,and radiation,has been doing great, he had a recent seizer and the tumor is growing again it is a quarter size, and we will be starting with surgery ,chemo and rad,once again he is a fighter,and the doctors are just amazed .anything is possible with the power of prayer,and positive thinking,wishing you and yours the best

twallen65
Posts: 1
Joined: Dec 2011

I just got back from the hospital were I had my latest check up and was happy to find out once again that I am still Cancer free. In 2004 I was diagnosed with a grade IV GBM and was told the prognosis was that I had 12 to 15 months to live and that the survival rate beyond 5 years was less than 5%. The doctor went on to say that he thought 5% was highly over estimated due to misdiagnoses. I told the doctor that what ever the percentage I was going to be on of the survivors. His response was that everyone says that. My retort was that the difference was that I believed it. I am now a 7 1/2 year survivor with no recurrences. I believe my success is due to four factors.

1. Believe you will be a survivor. I never got upset, never got depressed, and never gave up. A positive outlook keeps you strong through the ordeal.
2. Find the best surgeon you can. My surgeon was very aggressive. Many surgeons are afraid of causing damage to healthy brain tissue, so leave a "margin". This is a death sentence. My surgeon remove the entire tumor including digging out as many of the tendrils as he could. My only after effect is some reduced functionality in my left hand.
3. Educate yourself. Doctors tend to be overly cautious and to go with what is "the standard or care." The more you know the more you can participate in your own care. This is both empowering and effective.
4. Find a doctor with an open mind and try everything. I had a neuro-oncologist that was both excellent and open to new ideas (ironically,I out lived him. He passed away from cancer six months ago). I also found a naturopath who specialized in cancer treatment. Plus I researched ever experimental treatment I could find and convince my doctor to allow me to try them all at once. My treatment regime included the following:
-Radiation at the highest dose they would allow
-a year of BCNU, an older chemo drug. I requested the maximum does allowable. This nearly killed me and I end up having eight blood transfusions over the course of the year.
-two years of Temador the latest chemo drug. Also at maximum dose.
-High dose Celebrex at 4x the normal dosage taken during radiation and concurrent with chemo. Most doctors will discourage this due to the heart attack risk.
-Tamoxifen at 10x the normal dose. This caused tamoxifen retinopothy that nearly blinded me, and left me with some vision impairment.
-Shark Liver Oil
-Maitaki Mushroom powder
-Ruta Graveolen and Calphos (promising research on this is being done in India.)
-Vitamin B to keep your strength up.
I'm sure that by now there are other experimental treatments out there. Use them all so long as there are no known adverse interactions.
My last recommendation is don't fear death or pain. It is counter productive and may keep you from doing everything you can do. I firmly decided early on that I would rather the treatment killed me than the disease.

Good luck. Stay positive, stay strong, and you can beat this thing. I have.

mighty6
Posts: 47
Joined: Sep 2011

twallen65,

Congratulations for your latest clean MRI! In this holiday season, nothing is more than welcomed than clean MRIs for BT patients.
Thank you so much for your positive experience sharing. My husband has been dx for almost 5 months by now. He is on daily Temodar and Celebrax, he is in great shape.We are going to have follow-up MRI on Dec 21. Pray for good report for my hubby and all others have MRI due in December!

We will definitely look into all of your suggestions and looking forward to get the same results!

Happy holiday to you and good luck to all on this sites!

--Jane

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you so much for sharing your history. I really needed to read something like this. I am afraid that I am slowly spiraling down to a place where I am losing hope for my son. He's currently battling an aggressive recurrence of an anaplastic oligodendroglioma. Your post renews my hope and refreshes my commitment to be positive and to continue to fight hard and hold on to hope.
Blessings to you!
Cindy in Salem, OR

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I like your post; I, like so many here, needed to read your post.

My favorite line is: I rather die from treatment than from the disease.

And to try everything at once.

You reinforced what I have been thinking. That to treat brain cancer you have to be as aggressive as possible to prevent a recurrence. Doctors are timid in their approach. They are afraid of making things worse. I can't blame them because I wonder if I am doing the right thing. It would be a lot easier if I were the one with brain cancer but it is my sister (AA3 dx 07/11). What if I push for something that would make her worse? And telling me it is her decision is just a way for caregivers not feel responsible for the decision; or the guilt if something goes wrong. I know more about medicine than she does; I am nor exhausted by 2 brain surgery, 6 weeks of radiation and cycles chemotherapy. Logic dictates that I am better equipped in making such a decision regarding brain cancer treatment. And therefore I have this unbearable responsability that keeps me up at night. I have never failed my sister and I will assume the responsability of her treatment. She said :" Do everything like it would be for yourself". So this my guideline.

Why do some people survive and some do not? Some say it is the power of prayer (my parents), some say it is the multiple treatments (myself). My sister believes 100% she will die in her bed of old age at 102 with a flute of champagne. I believe it too.

J.

CLDavis
Posts: 2
Joined: Feb 2012

The is the first of our Family Journey~

On Friday, February 3, 2012, my Mother-in-law, the STRONGEST Woman I known and have EVER had the honor to love, was diagnosed with Glioblasoma. The Neurosurgeon removed one of two tumors on Friday, they had to stop the surgery due to malfunction with equipment in the Operating Room and resume the next morning, where he then removed the second tumor, the size of a golf ball, which the first tumor was attached to. The Neuro was able to remove 99% of the tumor. Within the past 6 days, she has bee discharged from the hospital, is home recovering from her surgery and we are awaiting a call from Duke University in order to begin Clinical Trials.

My Mother-in-law has overcome more obstacles in her life than anyone I know, she gave birth to my Husband at 19, divorced by 21, raised my husband on her own for most of his life. She remarried in her mid-late 20's, gave birth to my Sister-in-law who has Downs Syndrome, divorced in her late 30's, lost her job, went back to college, graduated at 43, started a new career, and now is Remarried to the love of her life. They have just begun their journey together, only being married for 6 years (7 in June). They were destined to meet, they both had gone on a blind date and meet each other at the restaurant while waiting on their dates to show-up...who knows if their "dates" arrived or not, it was love at first site for these two love birds!

I know in my heart of hearts, that my Mother-in-law (Mom as I like to call her, my own Mother suffered a major and life altering brain injury I was 20), will defy all the odds and live MANY years to come. She has far to much to look forward to for defeat - a Loving husband, Daughter, Son, Daughter-in-law, 2 Granddaughters (7 & 5) and a new Grandson (6 months) to look forward to spending many more years with!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, CLDavis.

I'm so sorry to read about your mother in law's diagnosis. It's a terrible shock and a life changing diagnosis, but you will find help and strength here at CSN. You will find wonderful, compassionate people here who totally understand what you and your family are going through, and people who will give you support and share valuable information with you.

You wrote a lovely, beautiful tribute to your mother in law. What a wonderful thing to have that kind of love and respect for her! I have found that in our battle with brain cancer, having loving, supportive people around us has been a huge encouragement and help. A fighting, positive attitude is critical in this battle, and I can tell that you will help your mother in law keep that attitude, even though at times it will be really difficult.

I had a physical therapist tell me something about my son's recovery that I think really applies to the roller coaster of life when you are fighting cancer. She said that your days will be like the weather....some days will be sunny and bright, and some days will be gloomy, dark and cloudy. But just because one day is rainy does not mean that tomorrow won't be sunny again. That has been so true for us. So when things look bad, I remember that tomorrow could be totally different, and all bright and sunny again.

Love and blessings to you and your family,
Cindy in Portland/Salem OR

connsteele
Posts: 232
Joined: May 2011

That is a lovely tribute to your mother-in-law. I'm sure, with her strong character, and the support of a loving family such as you, that she will come through fine. Please keep in touch with how things are going,
Connie
m/o David, age 34, dx AA3 on 4-13-12

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

HI:
Thanks for sharing all that you wrote. Thanks for the positive outlook and attitude. Do you mind asking where you had treatment? Congratulations on another good scan! God Bless you.
Edna

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